First RBH appt (not the protocol)

Not asking about the difficult asthma protocol - no idea if that's happening or not and if so it will be in the future and I know there have been posts I can search for. Just wondering about people's experiences of their first outpatient appt (esp with Dr Menzies-Gow's clinic)?

St Mary's have been great so far, they did listen, read my notes and I really appreciate what they're doing but - maybe because they decided so quickly to refer me - I don't feel like I got to go through everything and the letter to RBH doesn't cover things fully. Not moaning about it particularly, I imagine it's probably not meant to cover everything in minute detail; I just feel like I haven't had the chance to go into things in depth.

So really just wondering if RBH are good about covering all the details and asking about stuff in depth, right from the start? I'm a bit nervous about it as I know some on here have said they were brilliant and really helped but others were not so impressed so not sure how it will be for me, but any info about the first bit, or tips would be helpful.

I'll definitely be keeping an open mind and listening to what they say rather than trying to tell them what I think is the problem, but I've often gone away from previous appts elsewhere feeling like there's been no chance to have a proper discussion about some things and stuff gets glossed over (like the way breathing messes up my sleep), and I'm hoping that this kind of clinic will be more interested in the details.

Damn...yet again I am incapable of a short post. I have such good intentions!

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I've only had paeds clinic, but think there similar. Your first appointment will be lots of spirometry, and formal lung function (where you sit in a box), possibly blood tests, and maybe allergy tests. Then you'll see one of the doctors, which most probably won't be the cons himself but a reg. You'll also see an asthma nurse who'll go through your life!! They will be very thorough and listen, but will also look at tests and most of the time have copies of your notes

Good luck! When is it?

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Thanks anzharry! I don't know when, just had copy of the referral letter from St Mary's through yesterday.

I'm rather dreading them seeing the notes as they're full of my previous consultants' conclusions that I am basically just a hypochondriac, but as long as the RBH are prepared to come to their own conclusions...

Mind you, I'm not sure if the RBH actually will have copies of my notes, given that my local takes months to do anything at all and they've sent the other request to the wrong cons - just noticed, there are two with the same surname and they've got the wrong one! Better let them know...

Have had a few tests this time round with St Mary's (allergy, going to have reversibility) but imagine RBH may repeat. Never had the test where you sit in a box though.

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Hi

When I first saw Dr Menzies -Gow it was just an initial consultation and chest X-ray. I was then admitted a while later for a week of heavy duty testing. Have only got better control ove the last 5 years and been working for the last 4 years. My cons at my local is also cons at RBH so I am well looked after.

Good look and hope you get a diagnosis.

Lisa xx

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Thanks Lisa! I'm guessing you felt Dr Menzies-Gow was good then at listening etc, as well as your local cons? I have no idea if I'll get onto the heavy-duty testing week - I would be happy obviously if they came up with a solution without that, I just don't want to be sent away again minus medication.

I feel like maybe I'm worrying too much about all this esp when I don't even have a date yet, but it's hard not to. Just reminding myself they deal with difficult asthma not just severe so presumably have come across oddities like me before.

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Went for follow-up at St Mary's today. Awful lung function tests, not bad results but 8 tries and none the same lol, then got told by technician I was taking my reliever too much and you aren't meant to...um yes, I know. That is why I'm seeing a specialist, I don't take reliever for fun!

Was expecting the usual 10 mins 'here are your results, they're all normal.' oh no. IgE is high, what I could see of the spirometry was low, as far as you can trust it. And I saw not the reg like last time, but had an hour with someone who turned out to be a hugely big cheese asthma specialist and doesn't work for the NHS, just does this clinic and takes as long as he likes. Really good at listening and knows how important that is (he asked me how communication was with a previous cons, who he knows, and said that this cons is not the best at communication and that was why I was misdiagnosed.)

Basically, he said yes, I do have asthma, but it's hard to measure because I don't wheeze and PF isn't a reliable indicator either. And that he knows Dr Menzies-Gow well, he's very good and very nice, but may be more rushed because he does work for the NHS. It's now up to me whether I accept the RBH appt.

Not sure now whether I should! I don't want to waste anyone's time or see someone when I don't need to, but I got the impression from today that I'm still awkward, if not severe, there isn't an obvious treatment and so I thought it might be helpful to have two informed and helpful angles on things ESP as they can discuss it. Am I just being greedy here?!

Anyway sorry for another ramble...I am really pleased and no longer nervous if I do go to RBH as I know someone more expert than my GP is finally taking things seriously and actually paying attention.

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oops am i a bit thick ? but whats rbh ? x

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RBH is Royal Brompton Hospital.

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RBH is Royal Brompton Hospital.

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Hi there

I'm a patient who goes to RBH and am under Dr Menzies Gow and he and his team are brilliant. If you are fully happy with your diagnosis that's fine, but personally I would recommend using the appointment. At worst it will confirm what was already said.

The team are very supportive and can liaise with your local services to provide the support you need. RBH also offer physio help, psychologists, dieticians etc and treat you as a whole patient rather than a set of lungs.

If you do take up the appointment make sure you take a list of questions you want answering, it is easy to forget when you are in there.

Hope all goes well for you

MoominMama

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Thanks Moominmama, that is really helpful and good to know - I'm glad they've been good with you. I am definitely planning to use it now and it's good to know about the support services as well.

St Mary's has been great and the prof there is really, really good but as i have the RBH appt would like to make the most of everything they offer - as you say may as well! Was just worried I might be unfairly taking someone else's slot really now I have someone good. It's like with buses - none for ages then two come along at once

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Bumped up for Asthmagirl 'General forum > Good news'

Philomela, think this was the post you meant?

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Thanks TJ - yes it was, thanks for bumping as I should really have gone searching myself given it was my post and I mentioned it!

I'm glad Asthmagirl asked about this because I'm freaking out about it again but didn't want to start yet another post because I keep freaking out on here lol

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Philomela, if you can't freak out on here where can u freak out?

I say let it out, everyone on here totally gets it and understands

X

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hehe thanks Angelica, but you'd better be careful giving me carte blanche because I'm very good at moaning and freaking out on here lol and I have almost a whole month to really build it up to a fine art before the RBH appt, concluding afterwards with a spectacular rant (or maybe not...crossed fingers.)

In between I will practise with a small rant when my copy of the letter from the cons appt on Wed arrives, with maybe a few small freak-outs while I try to work out if the Symbicort is doing anything...

You have been warned lol, sorry to everyone who is more restrained even when they have much more to rant about!

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Hello

I got transferred to RBH after my local hospital and my GP had no idea what else they could suggest to control my asthma.

I recently stayed at RBH for the difficult asthma protocol and the tests they done and results they showed were very interesting and I have found since being treated under RBH, my asthma is a lot better controlled and has greatly improved, they really make an effort to get to you as a person and treat you correctly and follow up quite well and are very reassuring

Hope this helps

Nimz

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Thanks Nimz - and I see you've just joined so welcome!

It's really good to hear they listen and take everything into consideration - and glad they seem to have got your asthma under control.

Saw my GP this morning to get the Symbicort the cons wanted me to have and he was also reassuring about the RBH - said the unusual is what they're there for, and unlike in many of the 'standard' NHS hospitals, the patient actually being ill is not considered an inconvenience. LOL. This is why I like my GP, he really tells it like it is and has no respect for 'authority' (ie consultants/specialists) where none is due. He thinks I got screwed over by my local place when I went there and they pre-judged me without really taking a fresh look at things (which is why he had no problem referring me elsewhere when it turned out he couldn't handle me on his own because I'm too strange).